Wednesday, January 9, 2013

Question and Answer

So I felt the need to write, but had no idea of what to write about. So it's question and answer time!

What does your o2 saturation's run and what daily medications do you take?
I'm not sure what my sats were as a child, but after my fontan revision (7/24/09) they were 98%. They stayed that way for about 2 years. Recently I've noticed they are usually 93%. 95% on a good day and around 91% on a bad day.  
My current med regimen is; Digoxin (a med to help my heart), Celexa (anti depressant), Asprin, Zantac, Potassium, Coumadin, Coreg (beta blocker) 2x daily, Tikosyn (a med to keep me out of Afib) 2x daily, Lasix, Buspirone (anti anxiety med) 3x daily as needed, an allergy med, and folic acid. I also inject methotrexate (a form of chemo) every Friday evening. 

What do you remember from surgeries as a child and day to day living? Do you remember having any pain? 
My last childhood heart surgery was done before I was 2 years old.  So I don't remember it. I had my last heart surgery when I was 19. I remember that one, and honestly there was pain. Coughing was the worst. But they keep you well medicated, or well my doctors did, and honestly it wasn't as bad as I thought it would be. 
As for the day to day living, honestly it wasn't bad. My mother raised me "normally" just like she did my healthy brother. I was like any other 5 year old, 9 year old, 13 year old, and so on. There really wasn't any pain, except for the normal fall off the bike, scrapes and bruises. There was one point in time where I had a lot of stomach aches and they thought surgery flipped my stomach. But all the tests came back normal and eventually the stomach aches went away. 

You've been diagnosed with borderline personality disorder... Jessica what exactly is that?
It's been almost 2 years since diagnosis and I'm still not 100% sure how to answer this. So I will use a little help from my friend

"Borderline personality disorder (BPD) is a mental health disorder that generates significant emotional instability. This can lead to a variety of other stressful mental and behavioral problems."

It, along with my bipolar, effect my moods. I have mood swings, anger issues, self image issues, and anxiety issues. As my mother says, I have violent mood swings. I can go from being happy to ragging mad in a matter of seconds. I also had issues with my weight when I was a teen.

How to deal with "almighty" Doctors that don't share all his knowledge because they think you wont understand more detailed info.
I've had a lot of doctors who didn't tell me the whole truth.  I've learned to ask questions, lots of questions. I read my medical records and if there is something I don't know I ask. I found an old EKG that had stuff I was never told. I called the doctor out on it and he got mad. He dropped me as a patient. It is okay to get second opinions. If your doctor isn't telling you the whole truth, its okay to find someone who will. Make sure your doctors know you want to know everything. The good, the bad and the ugly and if they are good, they will comply.

I would like to know how long you were cheer-leading as a kid?
I must have told you the story about the pom pom extravaganza I did when I was little. It was one day. I never actually was a cheer leader. But I did do gymnastics when I was little. I wasn't very good and I only did one season (I just that's what you'd call it??) It had no effect on my health what so ever. I did play soccer a little bit when I was little. My mom pulled me out during the first game and never took me back because the running was effecting me to much. As a teenager I did drill team (dance) in my high school. I had to have a physical and have the doctor sign off on it so I could do it. He didn't want to sign, he didn't want me to dance (or even participate in PE for that matter). But I talked him into signing. He signed and told me I was only allowed to dance NOTHING else. It was fun and I loved it. I got tired quicker then the other girls, but other then that I was fine.

 Did you have many limitation and as you grew up how did that affect the choices you made?
I got tired quicker then most. I got sicker easier and the heat also made me sick. But that's really the only limitations I remember. I didn't play team sports because I just got to tired, but that was fine by me. I'm not really a team sports person. I've known my limitations since I was really little. I'm okay with stopping and resting when I need to and going to the AC when its to hot out. It never really affected any of my choices until I decided to drop out of college. I wanted to be a kindergarten teacher, but I get way to sick to be around that many kids everyday.

Are you okay flying?
I am perfect flying. I never had any issues at all.
I do have a pacemaker so I can't go through the metal detectors and have to get patted down, but that's the only "issue" I have. 
Also, because I've seen this asked a lot, sternum wires do not set of metal detectors.

Can you have children?  
I've had some doctors tell me yes. It will be hard, I'd need to be followed very closely by a cardiologist and high risk pregnancy specialist. I'd also need to have a c-section.  
But I've had other doctors tell me no. Not only would it be to hard on my heart, it could possibly kill me and the baby. Plus I'm on medications that can cause very serious birth defects.
I think it really just depend on the person. I've made the decision to not even try. I will adopt when the time comes.

Have you had the fontan? If so, do you do yearly checks for your liver and kidneys and when did you start doing this? 
Yes I've had 2 fontans. My original fontan was at age 1 1/2 and my revision was at age 19. Every visit we do blood work and they always check my liver and kidney levels. I've heard of some fontaners having MRIs on their liver but I have a pacemaker so we cant do that. We stick with the blood work.